EPILEPSY HAS NO FACE
By Doris AC Johnson MA of PSY, ABA
When I was eighteens year of age, many moons ago, I was involved with a young man that was different from what I was accustomed to. What I mean by that is the ‘boys” I dated before drove fast cars with rims on the wheels: music blaring, and fat wallets. I was just the trophy they needed to show off to everyone else. I fit into their lifestyles and they fit into mine because that was my idea of a courtship. It was the cool thing to do. “All my friends were doing it.” I did not mind it because I knew no different until I encountered someONE different.
I met the perfect gentleman at the neighborhood store. In those days, it was okay to mingle that way. He looked shy. In fact, he did not even speak up to me without the encouragement of his friends. After a few phone conversations, he asked if he could stop by for a minute. I was ok with that. He bought me flowers for no reason. He did not come in. He did not expect anything. He handed them to me through the door. Instinctively, I knew he did not have ill intentions.
We lived on the same street except he stayed several blocks down. One day, he invited me to dinner at his house. I accepted the invite. I expected for him to pull up in a car, but instead, he walked up to the front door and grabbed my hand. Previous boyfriends would blow the horn, or their bass-filled music would let me know they were there, and I would run out and jump in the car.
I did not ask any questions. I remember it being cold…maybe fall turning into winter. He reached for my hand and that is how we remained until we arrived at his house. He introduced me to his parents and his younger sister and brother. His mom set the table traditionally; two forks on the right side, the smaller one being the salad fork. When you looked to the right side of the plate, you found two spoons: one being the teaspoon. She even had cloth napkins. The last time I saw a setting like this was in middle school in my home economics class.
After dinner, I asked her if she needed help cleaning the table and washing the dishes. She told me that she was fine. I went into the living room to watch movies with the rest of the family. This was the perfect picture of a family…a real family. The ambiance was calm…nothing like the blaring music from cars and the rush of the day, eating fast food and driving with no destination. With this guy, I was visiting a home. This young man was quiet and well mannered. His tone quieted my lifestyle into a mute.
Over the next six weeks, and several dinners, I found myself liking him. One day, his mom agreed for me to help her in the kitchen after dinner. The temperature in the room was different. She said nothing to me the entire time. During the family movie time, I felt like I was under scrutiny. On this day, his parents drove me home. She told me that her son really liked me. In return, I told her that I really liked him also. She went on to say that he was special and deeply loved by her and the rest of the family. I had no idea what she would tell me next. She told me of his condition; he was epileptic. He had grand mal seizures. She told me that if I was going to leave, go at that time because of his feelings for me. As any parent, she did not want to see her son get hurt. I nodded my head yes indicating that I was not going to isolate him, knowing full well that would be my last visit.
When I got home, I rushed to my room to consult my medical book to read about grand mal seizures. I self-confirmed that the severity of them was too much for me handle. Just like that, I stop accepting his calls. Leaving him was a dagger to my soul. Every time I refused his calls, it hurt a little more. Innocently and ignorantly, I was afraid of him, and did not think I could handle being around him fear that he would have a convulsion on my watch.
About two weeks later, the same car that he was in when we met pulled up to me. They were yelling obscenities and threatening me. For a few seconds, I stared at him. He looked quietly sad, but I was eighteen and did not know any better. After our eyes locked, I began to run as they drove beside me threatening to beat me up. When I made it home, I silently cried. I was ashamed of my decision and I kept it to myself. I never saw him again.
The ugly truth is I could not tell he had this invisible condition. I do not believe in karma. My belief is that we are on the circle of life…a big spinning wheel that goes around and in our journeys, we encounter a barrage of things…both good and unfavorable. You never know what life will bring.
Six years later, I was diagnosed with seizures…the same as his…grand mal. The point is, when you look at me, you do not see epilepsy. Over the years, I met many people that have no physical attribute of this condition…or what society has made it out to be. Why is that? Because epilepsy has no face. …I WASN’T BORN THIS WAY.
For those of you who do not know what epilepsy is, let’s approach it. Epilepsy is a neurological disorder that causes unusual behavior that results in seizures or convulsions. Seizures stem from changes in the brains’ electrical activity. (ie the electrical system of the brain misfires). PLEASE NOTE THAT SEIZURES ARE NOT LIMITED TO BEING AN EPILEPTIC. Anyone can have an episode. Many people are born with seizure disorders. (like I am assuming my young boyfriend had a seizure disorder all his life) Sadly and shamefully, I cannot say for certain because I did not hang around long enough to find out. I now understand his struggle at a height many could not imagine. For many years, I have been called pretty, intelligent, and talented. I wish I could see through their eyes so I could adopt their view. Almost no one knows that my brain is damaged. THIS IS WHAT IT LOOKS LIKE. I believe that I am most noted for looking like I don’t have epilepsy…a severe case. My question to you is, how does epilepsy look? From what I have noticed, it is faceless; it has no look. I have lived with that stigma for twenty-three years, and I am nearly fifty. I wish I could tell you that it has been easy. If I did, I would be painting a picture with the wrong brush. Many parts of me are still slaying a dragon that will not seem to die. Every time I think he is gone; he rears his ugly head, and he stays for a while.NourishMEANT for supper; The point of this is that there are many invisible diseases and disorders…faceless. You might be sitting besides someone right now who is internally suffering with emotional, mental, and physical chaos. Be kind, do not judge, and be mindful that it could happen to you or someone you love. Look at me…I wasn’t born this way.